HRQoL assessment in Children with Asthma DISABKIDS HRQoL assessment in Children with Asthma Dr. H.M. Koopman

DISABKIDS Project: DISABKIDS - QOL Quality of Life in Children and Adolescents with Disabilities and their Families - Assessing Patients Views and Patient Needs for Comprehensive Care Monica Bullinger - University of Hamburg Ulrike Ravens Sieberer – KIDSCREEN Robert Koch Institute Berlin

DISABKIDS POPULATION Children and Adolescents (4-7, 8-12 and 13-16 yrs) Parents Chronic disease Asthma, Arthritis, Diabetes, Epilepsy, Cerebral Palsy, Atopic dermatitis, Cystic Fibrosis

PARTICIPATING COUNTRIES

STUDY DESIGN -Literature -Focus groups -Item selection -Translations -Pilot study and evaluation -Field study and evaluation -Implementation Several steps were taken to come to the development of the final EUROPEAn DISABKIDS questionnaire.

Components of QOL in children

STATEMENTS 1380 Disease specific statements 1647 Statements relevant to any chronic disease 488 General statements (not disease related) specific chronic generic generic

Structure of chronic generic moduls Independence physical Physical Limit. Medication emotional HRQOL Emotion Social Inclusion social Social Exclusion

Item Selection Results

DISABKIDS Field Study (N = 1152 ) Gender Male 52% Female 48% Age 8-12 53% 13-16 47% Disease Asthma 405 Skin 65 Diabetes 207 CP 91 Epilepsy 191 CF 43 Arthritis 150

Final DISABKIDS Modules Chronic generic module (37 items) - for all chronic disease - 6 domains (α .70 - .87) Disease specific modules (10 - 12 items) - specific to a disease - 1 or 2 domains Smiley Module (12 items) - generic The KIDSCREEN group has developed the generic modules

DISABKIDS Domains Chronic Generic Module Independence Physical Emotion Soc. Excl. Soc. Incl. Medical Asthma impact Asthma worry Smiley Generic (KIDSCREEN) Chronic Generic Module Disease Specific Module Asthma Generic Module

Chronic & Generic Domains What we see is that the distribution on the generic domains (smiley and generic KIDSCREEN items is less than the distribution on the chrinic generic domains.

Asthma Field study (N = 405) Rosier * Gender Male 59% 62% Female 41% 38% Age 8-12 66% 13-16 34% Severity low 43% 47% mild 28% 30% moderate 20% 18% severe 9% 5% * Rosier et al. Am J Respir Crit Care Med. 1994

How severe was your asthma We asked parents and children the same question: How severe did you find your asthma in the last year. The correlation was above .6.

Parent vs Clinician severity We also asked the parent questions on their childs symptoms and thus calculated an objective severity score (based on a measure by Rosier et all from 1994 in Am J Resp Crit care Med) This is represented by the blue bars. We asked the clinician their subjective opinion on the severity of the childs asthma and through an objective measure based on symptoms, medication and lung function based on a severity score modified from Hargreave et al in 1990 J. Allergy Clin Immunology). The correlation between both (obj and subj) was high 0.75) The clinicians objective score is given in the green bars As you can see the agree ment between the clinician and the child or parents is low (correlation 0.16)

Asthma Module Do you feel scared that you might have difficulty breathing? (worry) Do you feel short of breath when you do sports? (impact) Do you feel that you get easily exhausted? (impact) 2 domains Impact (6 items aplha .83) Worry (5 items alpha .84)

Domains per Country (asthma)

Correlations Moderate correlations of the chronic generic domains with existing measures - Anchor items (KINDL and CHQ) - DUX - KIDSCREEN generic module - FS-II-R (only parents) The 2 asthma domains correlate lowest with existing measures indicating that this gives us new information.

Child vs. Adolescent * * * * significant p< 0.05 Confounding factor is that the younger child has an average lower severity * significant p< 0.05

Child/Adolescent vs Parent * * * * * Significant (p < 0.05)

Domain scores by Severity Calculated by the objective parent severity score. Most domain scores differ significantly

Missed School Days Alternative measure for severity. By missed school days due to asthma. All differences are significant

IMPLEMENTATIE STUDIE GOUDA Onderzoek: april - september 2004  

Sociodemografische gegevens   Aantal Percentage Geslacht Meisje Jongen 41 55 43% 57% Afname Kliniek Thuis 75 23 77% 23% Gezondheid uitstekend zeer goed goed redelijk slecht 13 20 36 27 - 13% 21% 38% 28% Sport ja nee 15 81 16% 84% Hoe vaak <1 1 2 3x of vaker 21 38 1% 25% 46% DEELNAME: 170 families met kinderen met astma uitgenodigd 98 families vragenlijsten retour (97 kinderen, 89 ouders)

Betrouwbaarheid van de DISABKIDS vragenlijst Gegevens Kind groep Gouda (total n=97) Module Domains No of items n original score transformed 0-100 score Cronbach’s alpha Mean (SD) Chronic   Asthma Independence Limitation Emotion Social exclusion Social inclusion Treatment Impact Worry 6 7 5 94 89 92 93 91 4.2 (.6) 3.9 (.7) 4.4 (.6) 4.6 (.5) 3.9 (.8) 3.7 (.7) 4.3 (.7) 79.9 (15) 71.5 (17) 84.7 (15) 90.4 (12) 72.1 (17) 72.2 (19) 66.7 (18) 83.4 (17) .7748 .7220 .8055 .7272 .6926 .7682 .7469 .7435

Classificaties van astma ernst Subjectieve beoordeling van de astma ernst   Kind Ouder Ernst van astma niet beetje redelijk behoorlijk heel erg 26 (27%) 33 (35%) 22 (23%) 13 (14%) 1 (1%) 16 (19%) 31 (36%) 26 (31%) 10 (12%) 2 (2%)

Classificaties van astma ernst 2 Berekende beoordeling van ernst Ernst Ouders (Rosier) Verpl. subj. Verpl. obj. low mild moderate severe 46 (53%) 26 (30%) 15 (17%) - 13 (15%) 51 (61%) 17 (20%) 3 (4%) 6 (7%) 40(48%) 32 (38%)

Classificaties van astma ernst 3 Correlaties tussen metingen   Kind subj ouders subj Ouders (Rosier) Verpl. subjectief Verpl. objectief Ouders sub ouders obj Verpl. subj Verpl. obj - .355 .251 .183 .228 .561 .316 .373 .136 .178 .645

Correlatie ouders en kind   Domeinen Pearson Chronic Asthma Independence Limitation Emotion Social exclusion Social inclusion Treatment Impact Worry .216 .535* .383* .223 .094 .531* .506* .252

Hoe ernstig vind jij je astma ?

Hoe ernstig vind jij je astma ? 2

Conclusion * Differentiates for severity and illness * Comparison between countries * Advantage of several modules * Asthma module gives new data * Available in several languages * Proxy measure available Now results on group descriptions.

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Vragenlijsten

Programma Runquest

Beschikbare vragenlijsten

RUNQUEST

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DISABKIDS Chronisch generiek

DISABKIDS CG Vragen

DISABKIDS Short Form

Database

Profielscore

Evaluatie

DISABKIDS Einde

Computer programma Makkelijk hanteerbaar voor kinderen en ouders Geschikt voor herhaalde afname Aantrekkelijke lay out Screen en printer weergave resultaten in profielscores en tekst Koppeling individuele data -normbestand Bestandsbeheer (beveiliging)

State of the art I am young, but…I will grow

Department of Paediatrics Leiden University Medical Center Dr. H.M. Koopman Department of Paediatrics Leiden University Medical Center 071-526 1666 h.m.koopman@lumc.nl WWW.DISABKIDS.DE